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Mern27

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Mern27 Newbie
Mern27
Posted

I am new here and see that there is a lot of informative people on here so I'd like to ask some opinions on my 5 year old daughter's health. Since she was born, she was always very gassy and had very loose stools. When she was 3, she began to complain of tummy aches (pointing more towards the belly button area). When she was 4 we noticed blood in her stool so we took her in for allergy testing and it showed very significant milk allergy and mild egg allergy. That was about 8 months ago. We have taken her off all milk proteins and there is some improvement, but now she complains of tummy ache (higher up now) when she eats. Her stools now seem to be very pale...kind of grayish. Her skin is very pale, dark undereye circles and quite skinny. The doctor said she tested negative for wheat allergy in which he put in the same category as Celiac disease when he was talking. Is there another test that can be done besides just normal allergy bloodwork? Does this sound like possible Celiac? I feel like the doctor did not do the Celiac testing...isn't the wheat allergy test different?

I would appreciate any input!

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happygirl Collaborator
happygirl
Posted

Hi Mern,

I'm sure others will pop in with more ideas, but I wanted to welcome you to the board.

Yes, wheat allergy testing is different than Celiac.

Request that your doctor run the full Celiac blood panel, or find a doctor that will.

The panel includes: (from Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Best of luck, and I hope you find answers for your daughter.

akflboyd Rookie
akflboyd
Posted

Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Mern27 Newbie
Mern27
Posted
  • Author
Does she eat a lot of soy products? I have had my daughter on the Gluten-free Casein-free diet but was giving her soy yogurt. She kept complaining about her stomach hurting too. She is no longer eating the soy yogurt and we have not had any problems.

You have come to the right place! I am new to all this too so I don't dare act like I know much. Everything I have learned has been from people on this website. I cannot tell you how supportive and helpful it has been for me. I think the parents know more here on the website than any doctor.

Good luck and I hope you find the information you are looking for!

Kathleen

Thank you for your reply. The only soy I have her on is soy milk...ocassionaly soy ice cream (once a month maybe). She tested negative to soy reaction so I would think it must be something else. Did your daughter have teeth problems? My daughter has had probably about a dozen cavities and I take very good care of her teeth. I heard that this can be a sign of malapsorption? I'm sure the dentist must think I am an awful teeth brusher! She also has swollen abdomen alot.

Mary-Ellen

MammaW Newbie
MammaW
Posted

Hi there, I am very new to all this too. We don't even have a diagnosis for my 1 year old, but I have learned SO much from everyone here on this board. I wish I could remember all the good postings I have read that sound similar to yours, but I guess I would just say keep reading and reading here on this board -especially the "parents with kids" section and you will soon have many suggestions. I personally am considering the enterolab testing that everyone has suggested, but I still haven't decided yet or I may just stay gluten-free for my little guy for now and see how it goes. It is a week today of gluten-free and we have it a little rough because of a known rice allergy. so many gluten-free foods are made with rice. but good luck and definitely keep reading on here. Everyone has been wonderful!

confusedks Enthusiast
confusedks
Posted

I just wanted to say that even though she came back negative for a soy allergy, she may have a soy intolerance. The difference is an intolerance won't kill her. A soy allergy would give her symptoms like hives, weazing, etc. I have a soy intolerance but I also tested negative to the soy scratch test and blood. But it does give me terrible headaches AND stomach problems.

Kassandra

Darn210 Enthusiast
Darn210
Posted

Hi Mern, Welcome to the board.

Typically, Celiac disease will be diagnosed through a GI doc, not an allergist. Celiac disease is NOT an allergy. I'm assuming you don't have a GI (yet ;) ) so it may be quicker if your pediatrician would be willing to write up the lab request for a Celiac panel (the list that Happygirl had in her post). You may also want to add the Celiac gene panel which will tell if she is genetically predisposed to it. You're daughter has racked up quite a few of the "typical" Celiac symptoms. Don't except "not allergic to wheat" as a definitive answer. I think you're on the right track doing some research here. Good Luck.

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gfpaperdoll Rookie
gfpaperdoll
Posted

the bad teeth is so common for children with a gluten problem. If you are not wanting an official diagnosis, I would just go gluten free & dairy Free & no soy milk, some soy milk etc, is not gluten-free. no one really needs soy or dairy.

my 9 year old double DQ1 granddaughter has lost all the enamel on her teeth. Her little borther age 7 has had the cavity problems and has a couple of spacers... Dentists need to be aware that excess cavities and dental problems in children is almost always due to a gluten problem, well unless they are 5 & still nursing a bottle at night ;) these grandchildren are not gluten-free because it just ruins my sons life - his words not mine. I am a little more than upset to see their health going down the tube... The 9 year old was also battling pneumonia most of last year & used to have asthma type attacks & has numerous hives & itchy rashes

& yes, I love Enterolab.com for testing, especially for children. i do not believe in an endoscopy for a child & if you have read the posts about the dangers of anethesia for children which everyone in the medical field knows & also they can easily get a hole poked in their intestines or have bleeding problems... etc etc. and not counting the fact that everyone should stay as far away from a hospital as they can unless they absolutely have to be there because of all the super bugs that hang around hospitals, & the hospitals have spent years glossing over that fact...

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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